Cancer, Coping, and the Every-Day Maces

Along with the medical updates and too many of my emotional rambles, we've been collecting a growing number of statements from Hyrum himself. In addition to sharing what is happening TO him, I think it's equally important for us to share HIM. Here is my attempt.  It's normal for kids to have their little hobbies and curiosities: Bluey, raptors, etc. but Hyrum has never been much into things. Ever since he was little, I've summarized him by calling him "a little caretaker", the natural-born brother. He thrives on teaching his siblings, fetching their shoes, and feeding them yogurt.  In addition, he has always been a deep thinker, a reader, a quick learner, and a deep believer. His heart is naturally obedient and good, and he drives himself intensely to make good choices. He has called his tumor and vomiting "the worst", and one day said to me quietly, "The tumor is taking away my choices." All I could say was *something like*, "You'

Before I jump into every-day details, there's something we want you to know. Since Hyrum's diagnosis, we've had a LOT of people reach out to us in different ways. Facebook messages, texts, phone calls, letters, packages, GoFundMe donations, treats, food drop-offs, hugs, prayers, etc. Michael has been pretty good at responding in a timely manner, while I have not lol We both share this sentiment, however: the best part of any offering is the opportunity to see your name, hold our shared memories for a moment, and remember the kind of people you are. Thank you for being and doing good, in all the unique ways you can. We've been blessed with such good lives: simple summer days, playing basketball and walking to next-door piano lessons. Joyful high school lunches, laughing with friends. Crazy college single years, adventuring and more. Church missionary service, where rain falls fast and relationships run deeper. Early married years, with a small apartment and a big group o

This is far from a full retelling, but it does capture moments.  Wednesday, April 13: Hyrum’s first day at radiation. The treatment takes place at the Stephenson Cancer center, 18 minutes from our home. He lays down on a table and techs slide a pillow under his knees. He settles his head onto the "stinky blanket", and they attach his mask over his face, securing it to the table. He is unable to move his head or neck for the duration of the treatment. The machine rotates around him, targeting his tumor. All of this is no issue for Hyrum! However, the treatment requires him to be alone in the chamber for 15 minutes. Steroids and, well, a tumor... have left his emotions running high. Dad is Hyrum’s one comfort object, and Hyrum has needed his presence always.  Michael said “I'm not taking any steroids, nor do I have a tumor, but leaving Hyrum alone in that room by himself was the hardest part for me as well. Hyrum jumped onto the table and put on the mask that immobilizes h

Hyrum's brain cancer is a diffuse intrinsic pontine glioma (DIPG). There is no known treatment that can cure it. With radiation and a clinical trial, we may have another 9 months with him. Anything more is a miracle. When I found out about Hyrum's diagnosis, it leveled me. I asked the nurses to find me an empty room, and I sobbed on the tiny bed. If you ever wondered why movies pan away and insert emotive music when a character cries like that, it's because it does NOT sound good.  I couldn't stand. I couldn't feel my fingers, toes, or ears. The information that I had about his diagnosis, coupled with Hyrum's unprompted comments about returning to God, left me struggling with what to pray for. I knew in my heart that I couldn't ask God to give Hyrum a long life.  The next two days were full of doctor visits and hospital life. As I entered and exited elevators, shuttling between the hospital and home, there was a literal, physical force carrying me. I know ho

 Some of you know that Caleb got RSV when he was a newborn- it was life changing for me, and I refer to the experience frequently. He suddenly stopped breathing, turned gray, was rushed in an ambulance to the hospital, and spent 10 days in Primary Children's hospital on a breathing machine.  I can't help but reflect on that experience as we once again walk hospital halls. Obviously, our feelings change from hour to hour, and there's not just one comparison to be made. However, there's a really insistent metaphor that keeps coming to mind, and it might provide a general answer to the question, "How are you doing?" Here are two of my most used kitchen bowls: my beautiful wooden fruit bowl and my sturdy soup pot. I love them both. When Caleb stopped breathing, I was that wooden bowl. You know that "refiner's fire" that the scriptures sometimes mention? Suffering, the unknown, loneliness, pain... That 10-day refining fire burned me. It took months fo

 These have been the longest three days of our lives. A LOT happened in a short time, so here is our summary: - Hyrum was vomiting and experiencing rapid vision changes for about 5 days. It seemed like his vision was causing dizziness/vomiting. We took him for a pediatric vision photo test on April 4, and she referred us to a CT scan. That test revealed a tumor on his brain stem. The pediatrician cried when she told us, and we felt seen.  - She asked us to go immediately to the pediatric ER. Thank GOODNESS that my family was in town to be with Caleb and Emily while all this happened. What a miracle. We told Hyrum that his brain had something growing inside that was pressuring his eyes, and that he would need medicine and tests.  -He received steroids at the ER to reduce the herniation (swelling) of his tumor. Parents of hospital patients are (of necessity) mostly vehicles of information: sharing information and listening to information about the child. However, one of the doctors pause